Sunday, 2 October 2016

Possibly one of the most well-known quotes in living history
I would say. I ended my last blog saying I dare to dream that I will be one of
the lucky ones to see the cure of PH and that I can live a very happy, exciting
and long life. That dream hasn’t
changed. I’ve just desperately been trying to make this dream turn into
reality. For the most part, I have. I think everyone would agree who has seen
or spoken to me in the past 6 months that they have seen an extremely happy,
positive girl, more than I have been in a long time, maybe ever. I’ve dared to
dream that all the fitness I am doing and how active I am being is keeping my
chances of living longer than the doctors have predicted. The past few months I have felt as strong as
ever, if not the fittest I have ever felt. I have even started to dream about
entering the Paralympics, as after all having a heart/lung condition, surely
ticks that box? I’m not sure what sport I would want to enter yet, but you have
to dream big to aspire to the next step.

Looking back at my 32, nearly 33 years of life so far, I
realise there is a common theme. I have always had big dreams and the majority
of the times I have succeeded in accomplishing them. What I have also learnt is
that I don’t tend to do things the most straight forward way, instead taking a
massive detour, but undeterred I get there, it just might take me longer than
other people.

I always struggled at school academically. I started my
infant years at a local Catholic school and as I always finished my work first
I was chosen to deliver the milk to the other classes. When I was 7 I moved to
a more academic school and went from being one of the cleverest in the class to
finding the work much more challenging. I worked hard with few rewards along
the way, until aged 16 an English teacher suspected I was dyslexic. After
various tests and numerous assessments the suspicion was confirmed. Receiving the
news refocused me in a positive way and with a lot of hard and encouragement I
was able to be very successful in my exams both at school and university.

As a lot of you know I was due to move to Australia in 2013,
having secured a job and sponsorship. It is 3 years ago nearly to the day that
I was desperately checking my emails to see if my visa had come through. For
some reason and I still don’t know why, the visa was massively delayed and what
should have taken 3 weeks took nearly 4 months to come through. It was during
this time when I fell ill and I was told my dream of Australia wasn’t meant to
be. It may sound silly but I went through a grief cycle when I was told
Australia was not an option anymore. Not only was I dealing with being told I
had PH but also being told the life I had dreamed about and was just about to
start was no longer a reality, I found this really hard to accept. It took me
quite a while to get over, but I did and I accepted that it was unlikely I
would ever make it to Australia again. During the last 2 and bit years I
focused on other dreams, mainly trying to live each day and focus on the here
and now. So when earlier this year the opportunity arose for me to go to
Australia for a few months, as you can imagine I jumped at the chance.

Living with a condition like PH, it’s tough. At the
beginning you’re not really sure whether you can dream, as the future seems to
be tainted. When you’re told your life will be significantly cut short by a
disease that no one really understands or has any know how of how to halt it,
it’s hard to know what to do. It was only really earlier this year when my mental
mind-set changed that my health started to react positively. During the last 6
months I have even looked to the future and actually stopped worrying about how
long I have to live and focused on my life pre PH, and I believe this has been
down to my new mental attitude. Apart from the regular reminder to take my
tablets every few hours I almost forget now I have ph.

My latest dream has been working out how I can get out to
Australia longer term. I’ve been trying every which way to try and make this
happen, speaking with immigration lawyers, various medical professionals, and
at the moment it has been proving quite challenging. But if having PH has
taught me anything, it is to dream big, expect the unexpected, have a little
bit of hope and if it’s meant to be it will all work out. Typical for me I had
to fall in love with an Aussie and make life that bit harder, but then if life
was straight forward wouldn’t it be boring!

It’s been a frustrating week with a few tears, and a few
“why me?” and “when will I get a break?” but walking back from work to home
this evening in the rain (which I may add is a 3.3 mile walk) I have come to the
realisation that it will happen, I just need to give it time. Plus I have lots
to be grateful for as I am due to head out on a trip to Australia and Bali in
November.

Quite a few people in my situation I know have made bucket
lists. As usual being me I like to name things differently so I have put
together a dream list. Some achievable, some maybe a tad unrealistic but it’s
good to have goals. Hopefully I will start to put many of these into action
over the next few months/years. So here I will start my list of top 10 things I
dream of achieving. I’m sure over time I will add more, as half the fun is to
keep dreaming.

Raise money for PHA charity, doing some kind of
fitness competition. Not sure what this will look like yet but if anyone has
any thoughts I will happily listen

Enter MasterChef

Travel as much as I can all round the world

Smash my current shuttle walking test when next
at Sheffield, beating my current record of 690m

Find a sport I can compete in the Paralympics
(well I have to dream big!!!)

Open a deli/café

Live in Australia

Adopt children

Be able to run 5km (for anyone who knows me,
knows this would be an absolute miracle to do, but keen to give it a go)

About Me

Hi, my name is Gemsy and I'm trying to raise awareness about a rare heart and lung condition I have called Pulmonary Hypertension. This is my story on how living with an incurable lung and heart disease affects me.